ALS, Lou Gehrig's Disease

[BigV]

Tink's twin sister, M, has ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig's Disease. She was diagnosed last month after some increasing weakness and difficulty walking.

This is a tough disease, taking your muscles and leaving your mind. Nine people in Tink's family have died from the disease in the last two generations, M is number ten. M is putting on a brave face, no, that's unfair. She *is* brave. Tink is brave too. The terrible part is that there's nothing to do. Literally, no exercise. The doctor say *life* is her exercise. And there's some medicine, but it's pretty worthless.

You can live a long time with the disease, look at Stephen Hawking. Thirty years and still kicking. Well, clicking. I saw him deliver a talk once a few years ago. He was great. He spoke through his speech synthesizer, talking about his book A Brief History of Time.

But it is scary as hell. Tink watched her mother die in less than a year, and she lingered the longest. Her brother, J, was diagnosed two weeks before he died. That doesn't count the denial time, of course. But still it was like a bolt of lightning.

It's so tough and scary and discouraging. Her mom at first had trouble getting around, until she moved into the wheelchair. At first J had trouble eating and swallowing, until he got his feeding tube installed. They both eventually had trouble breathing and that was the end.

What will the future hold for M? Of course we don't know. Will it be two weeks? Two years? Or two decades? We're all hoping for the best, but we just don't know and that's the worst. Click the link. Join the group. Keep her in your thoughts and prayers. Please.

Here are a couple links

www.alsa.org

ALS group